Note: I need to acknowledge something to a person who reached out to me for help. This person believed they were developing an infection of their shunt and were desperate. Due to my own recent challenges, I didn’t open that email until a week later, and then due to some strange glitch, lost it entirely. To that person, I am deeply sorry, and I pray you were able to avail yourself of the ER in time. FWIW, I just went through the same problem 7 weeks post-revision. I post my email contact, ShuntWhisperer@ShuntWhisperer.com to help answer questions if possible, but I am not a neurologist or neurosurgeon, and if anyone should find themselves in and emergency situation (infection of the shunt tract qualifies), get to your physician or ER first, then email me if you like. FWIW, I am making it a point to check my email every morning at the very least as long as I am able.
Greetings to all.
It’s been a minute, to be sure…more like 4 months.
My last post was in late 2018 regarding an epiphany I had been given regarding a theory about how a person develops acquired adult IIH. Of course, right at that point, the creaking, weak, bottom fell out from under me.
I had to devote what little functional capacity I had to managing this new challenge; making new posts here was just not possible. February was a very, very, very (etc.) difficult month. Most days I felt like I a lone person in a dark void above a bottomless abyss, clinging by my fingernails to my spiritual, almost tangible touchstone, Jesus Christ. I can say with complete certainty He is the only reason I am still here to right this story.
The Lord works in His own way(s). In my case, Dr. Kenneth Liu of Penn State Neurological Services, the neurosurgeon who saved my life by placing my first VP Shunt two years ago, revised my shunt and repaired the inexplicably persistent hole/CSF leak associated with the craniotomy (surgically created hole in my head). I referenced this problem in the post “Juice Boxes and My Brain…Who Knew?). I can now say with a weird sense of satisfaction that I now have a metal plate in my head. A small one, but nonetheless, a metal plate.
This surgery resulted in an immediate, marked improvement, but still with instability, though not nearly as severe. There was still a small but noticeable CSF leak. At 5 weeks that last leak suddenly stopped, and it was as if my brain had suddenly been switched back “ON”. Most notable was that extreme sensitivity to certain triggers, especially barometric pressure, was either drastically reduced or eliminated altogether. Before the revision surgery, I could not stay at my new retreat in the mountains at a modest 2200’ elevation if the barometer dropped below 940 mb. I would become bedridden with fatigue, pain, and ‘brain fog’. I would be forced to leave the mountain for lower elevations, and I began to be able to predict at which turn in the road I would start to feel improvement. I would stay at a lower altitude for a week, and when I felt better, I returned, only to have the scenario play out over again within the next 7-10 days. Was this real, or was it some perverse trick of my psyche? I decided to find out, and with a prescription from Dr. Liu, I bought a home hyperbaric chamber. Expensive, but it was the only way I knew to answer the question about the effect of barometric pressure on my personal form of this disorder.
I’ll go into more detail about the chamber later; for now I’ll just say I ran a series of controlled experiments. The results were undeniable: climbing in the hyperbaric chamber and simply increasing the pressure inside to 30mb above local pressure reduced or eliminated by pain and feelings of fatigue. However, no matter how long I stayed in the chamber, once I exited, those symptoms returned in 1-6 hours depending on local conditions, so there was no doubt that this small change in barometric pressure was enough to drastically affect my well being.
I also noticed something else: when I got out of the chamber, I could feel my shunt flowing. If you have a shunt, you know what I mean. More importantly, I noticed that swelling developed along the shunt components under my scalp starting at the craniotomy and eventually proceeding back to behind my ear. I interpreted this as a CSF leak. The catheter that connects to the shunt valve is a surgical silicone; human tissue does not adhere to this material. I also discovered these catheters are further treated make them even more resistant to the adhesion of cells in order to prevent stray bits of protein and brain tissue from adhering to the inside of the catheter and eventually blocking it; this treatment is intended to prolong the life of the shunt. In my case, bone had failed to fill back in the craniotomy, leaving a path for CSF to leak between the outside of the catheter and the dura and along the catheter and shunt under my scalp. This resulted in overdrainage of CSF as it was drained not only from inside my brain as intended, but from outside the brain as well. This caused me to experience intracranial hypotension, and was a truly miserable test of my personal belief that a more appropriate term for this disorder is Intracranial Pressure Dsyregulatory Disorder (ICPDD).
I took this information to Dr. Liu and ultimately the decision was made to revise the shunt and repair the craniotomy. Now that this unwanted leak has been stopped I have experienced increasingly stable improvement of my disorder, including greater functional capacity and dramatically reduced ‘fibro’ pain. I still have challenges from the effects of almost 2 years of wild swings in my ICP, including physical deconditioning. Spring weather patterns here have been brutal, with at least 4 “bomb-grade” storms (defined as a weather system with at least a 24 mb drop in barometric pressure in 24 hours) in the last month. Prior to the March surgery, these systems invariably laid me up for at least three days; now, their effects on my disorder are greatly diminished, and seem to be continuing to diminish with each passing day. Only one recent freak set of back-to-back storms really hit me hard, but in that case there was also a potentially serious late postop complication that I was fortunate to recognize and address before it got out of control.
All this preamble brings us to now. ShuntWhisperer started as merely a “this is my story, maybe it will help you” type of blog. Over the course of two years, I’ve learned more as I’ve continued research and experienced new challenges that while very difficult, contributed to a better understanding of my disorder. The structure of the original site was never intended to present this material of this depth in a coherent and orderly manner. I never expected it to be more than a few pages, but it has blossomed well beyond that. Thus I will be restructuring the site “on the run” as ShuntWhisperer 2.0. It is intended to be concise, presented in lay language to the degree possible, and accompanied by references to existing research, with a reference section for physicians. Please don’t expect a visually dazzling site; I simply don’t have the time to post anything but pertinent information. Also, the original ShuntWhisperer site and its contents will still be available, accessible from the new landing page.
SW 2.0 is still intended to be based on my personal experiences and research. I can’t claim anything I post applies to any other person with a disorder of altered intracranial pressure, although there are certain immutable laws of human physiology that lead me to suspect that is indeed the case; I just can’t make that claim. I’m not sponsored, I don’t get paid for this, and don’t care to receive any credit for any good that comes of what I post. I am doing this in Service to God in an attempt to help others, as well as in memory of my wife Trina. My contact email is Shuntwhisperer@shuntwhisperer.com for anyone who has a question, feedback, or suggestion.
As always, prayers to all for comfort, support, and a better quality of life.
April 26, 2019
Today’s storm and rain has passed; it’s a gorgeous spring day on the mountain, and I’m going to take a break to enjoy it, wishing Trina was with me.
“But ask the animals, and they will teach you, or the birds in the sky, and they will tell you; or speak to the earth, and it will teach you, or let the fish in the sea inform you. Which of all these does not know that the hand of the Lord has done this?”
Job 12: 7-9